I have a problem with Trine Tsouderos's reporting on XMRV: 3 of 3

Part 1

Part 2

Before I get back to this last installment, this last look at the reporting of Trine Tsouderos to date, I want to address one specific criticism that some have levied at the Whittemore-Peterson Institute: the idea that, if the findings in Lombardi et al don't pan out, that this represents a 'false hope' that will have done patients a disservice.

As a patient, I disagree.

Why? Let's say XMRV doesn't pan out.

This 'false hope' has happened at a time when patient advocacy has finally been able to take effective hold on the internet. More so than in previous years, when fewer patients had computers, and when dial-up limited communication and interaction. Over the past few years, various sites have popped up that have enabled people to organize more effectively than in the past. Facebook and Twitter play a big role as well.

This means that people are also more well-informed, and understand that nothing is graven in stone, understand what's at stake, or at least have the opportunity to achieve that understanding due to the availability of information.

This community could use some hope, even if it does turn out to be false. We're learning on an ongoing basis how to mobilize, how to communicate, how to try to move forward. And this is happening with XMRV (or non-XMRV, related viruses) being the major issue driving advocacy, the all-important motivating factor, the backdrop and backstory for all of the awareness and mainstream media coverage we've seen over the past year or so.

So I reject the idea that 'another false hope' would be such a negative for this patient population. Prove XMRV wrong? That hasn't been done, but if it is, we've learned a lot, lessons that can only help us.

The CDC, and by extension the NIH, the NHS and other governmental health agencies, and medical science at large has ignored us for decades. My belief is that they will no longer have that luxury anymore even if XMRV turns out to be the 'blind alley' some, inexplicably, think it already is.

Any of the doctors, researchers, scientists, who have expressed concern what this could mean if this represents a false finding, the damage it could do to the collective psyche of this patient community?

Where has your concern been for the past 25+ years?

Don't worry about how we'll take the hard news if XMRV doesn't pan out. We have so much fun every day, we'll somehow manage to deal with it. Most of you never worried about us before, so you don't have to start now.

Oh, yeah--one more thing. On this issue of dismissing the findings of Lo et al as not confirming the findings of Lombardi et al, which has been stated by Trine Tsouderos as much as any one person I know of--did it ever occur to you that the alphabet soup is difficult to keep tabs on?

There's XMRV, MLV, HGRV, PMLV, XMLV, HMRV...I've seen all of these used. I can't keep track sometimes, and I think I actually know what the differences are (although I'll steer clear of defining them here). Is it a crime against science to refer to them generally as XMRV?

I know that wouldn't be correct. But, really. This is all confusing enough. The study of MLVs is not new, but the specific retrovirus XMRV is. Is it such an awful thing if we 'think' of the MLVs found by Alter & Lo as 'XMRV' for the sake of discussion?

Because it seems to me that's what many people--patients, advocates and other interested parties, and journalists as well--have actually done. Yet it's awfully important to some to be highly specific about the viruses, but not the cohorts being tested.

Double standard? Is the difference between the terminology used for the viruses in question more important than the differences in diagnostic criteria?

Why?

Because the people who pay so much attention to one yet ignore the other obviously care about us, of course.

So, back to the topic at hand: in part 2 I left off following two reports Trine Tsouderos filed in October, 2010.

Fast forward a few weeks.

An awareness campaign undertaken by patients brought a message to the American Red Cross, who on December 3rd decided that CFS patients should not be allowed to donate blood.

On December 14th, the FDA's Blood Products Advisory Committee meeting spent quite a bit of time on XMRV, including several presentations. Dr. John Coffin and Dr. Jonathan Stoye spent a fair amount of time suggesting that Dr. Lo's findings, as well as those of Judy Mikovits, were the result of contamination.

Here is the transcript, beginning at the relevant portion, Dr. Lo's presentation. There is a lot here, but it is worth a look--at the very least, especially in a context where Trine Tsouderos assigns that relevancy to Robin Weiss' paper while having all but ignored Lo et al.

I see no reason to not include a link to the top of the document; it's not easy to navigate, but it'll be easier from here than from just a link to the beginning of Dr. Lo's presentation. After all, there were many presenters, and many viewpoints. The speakers included Drs. Lo, Indira Hewlett, Maureen Hansen, Judy Mikovits, Jonathan Stoye, Francois Villinger, Graham Simmons, Michael Busch, and Rachel Bagni (if not all of these people actually are doctors, please forgive me).

The public comment portion of the meeting, which begins at page 300, contains some especially interesting material.

Dr. Alter apparently considered the treatment of Drs. Lo and Mikovits from Jonathan Stoye and John Coffin to be aggressive enough (the basis for which was/is their newfound belief that XMRV and related findings are a matter of lab contamination) to warrant a previously unplanned, and, I'm told, what looked to be a hastily-composed response. Among his remarks:

"it has been confirmed now in at least four studies, two of which were presented today, that either XMRV or a polytropic MLV is associated strongly with chronic fatigue syndrome."

These remarks can be found towards the end of the public comment section, just above page 340.

Here's a link that describes Jonathan Stoye's aforementioned uncomfortable, um, moment addressing the untested samples from Groom et al. The samples I mentioned earlier on? The ones that were sent from NYC to London, which to this day remain a mystery as to their ultimate disposition?

I have to admit that as a biased patient, reading that was satisfying, gratifying, positive on many levels. It represents, to me, one of the least 'scientific' moments over the past year and a half--a period where strict adherence to 'science' would have served everyone a hell of a lot more than what's actually transpired. The 'false hope' meme is a red herring. The very real emotion involved in wondering what was going on with those samples, seeing the negative result of Groom et al, and wondering why this cohort somehow did not make it into that study--a question that remains unanswered...

...that was singularly unpleasant, all the more so because, for months and months, until it became clear no answers were to be forthcoming, Dr. Enlander and his patients had to endure a very frustrating, extended wait. Which only, seemingly, ended, when word came that Jonathan Kerr was to lose his job.

Under other circumstances, anything resembling Schadenfreude from reading the exploits of The Patient Advocate on that Tuesday in mid-December would have been anything but appropriate. As it was, it was more like the opposite effect of reading a Trine Tsouderos report on XMRV.

Ah, but mere days later, 4 papers alleging contamination in XMRV studies appeared in the journal Retrovirology. In their wake, one of the researchers, Greg Towers, was quoted as follows:

"XMRV is not the cause of Chronic Fatigue Syndrome."

This was days after the FDA meeting--where, oh, by the way, the vote was 9-4 in favor of the FDA banning blood donations from ME/CFS patients.

What was that I remember about Judy Mikovits making all sorts of 'claims?' And how bad, how wrong this was? Oh, sorry--this claim was actually based on published research.

Kind of like Harvey Alter's claim that Lo et al confirmed the WPI's study.

Ah, but this is important stuff. Now, Trine Tsouderos had not covered the leak of Harvey Alter's slides. Had not covered the withholding of the Lo et al paper. Did not cover the Lo et al paper.

Did cover the Weiss paper.

Did not cover the Red Cross blood ban (or, to the best of my knowledge, any of the other blood donation bans). Did not cover the FDA meeting.

And while I certainly don't expect a reporter to think they will find credible material for a story on a blog (it's not like this was covered anywhere else, either, in fairness), the untested samples from Groom et al was something else we didn't see.

But we did see this.

What a shock.

"Contamination is a likely explanation for scientific data that seemed to link a retrovirus and other mouse viruses to chronic fatigue syndrome and prostate cancer, according to four papers published Monday in the journal Retrovirology."

No, nothing offered by Mikovits, Alter, or Lo one week prior was worthy of so much as a mention. I mean, it's only the blood supply we're talking about.

"several other teams of researchers, including one led by the U.S. Centers for Disease Control and Prevention and another from the National Institutes of Health and the U.S. Food and Drug Administration, have published papers failing to find evidence linking XMRV to chronic fatigue syndrome."

I'm sorry...I really have to ask. Would it not have been prudent for a journalist to at least reach out to Alter or Lo for a comment?

No? Seriously?

Tell me this is not bias. Please. I'm pretty open-minded. If you don't like what you're reading? Convince me. This should be a discussion. I think so, anyway. Maybe I'm wrong about that, too.

"One of the teams, from the NIH and FDA, found evidence of other mouse viruses in the patients, but it did not confirm the original study. The new papers suggest contamination could explain that team's findings, too."

Yes. It could. But, like I said earlier, we're supposed to accept that these guys over here got everything right (except the cohorts), and those guys over there were just sloppy enough to contaminate their studies.

Now, I do not mean to demean or insult anybody. My understanding is that Brigitte Huber is an accomplished researcher who enjoys an excellent reputation. Contamination is, we are told, always a possibility, as it can occur so easily, in so many ways.

But I haven't forgotten the report from last year's Invest In ME conference where Huber presented her study, where she announced that, well, I might not have this exactly right, but...if her results were explained by contamination, then that had to be the case for Judy Mikovits' work, too.

I'm pretty sure I'm not comfortable with that assessment. And Huber's comments upon publication were similarly specific and definite.

Now, there is this panel--the XMRV Blood Working Group. The CDC, the NIH, FDA, CAA, WPI all represented. We have not heard a lot out of them, but they've been at it for months now.

Trine Tsouderos hasn't bothered to mention this, either. Why would she? The CDC study was negative, and the NIH/FDA paper did not confirm the original findings. Right?

Well, somebody thought it was important enough to look into. And towards the end of this column, we do see this:

"Researchers said a large study being led by Dr. Ian Lipkin at Columbia University should help settle the question."

Why bother, if the findings appear to be refuted by claims of contamination?

This government of ours wastes more money on useless nonsense, I tell you...

Wait...where are we? December 20th? There's more.

Another blog by Amy Dockser-Marcus in the WSJ.

Strange, I didn't see this in the piece Trine Tsouderos had:

(the papers)..."are unlikely to resolve the debate over whether XMRV is linked to diseases like chronic fatigue syndrome or prostate cancer, especially since the authors of the papers disagree on the interpretation of their data."

Huh? That's not what Trine reported. She did report that John Coffin admitted that these papers did not settle the question, but heck, he co-authored two of them. Okay, let me be clear: I certainly didn't see anything representing anything resembling a disagreement over the published data in the Los Angeles Times.

Maybe it's my reading comprehension.

Or maybe there's something more here.

"Greg J. Towers from University College London, a senior author of one of the papers, told the Health Blog that his group’s findings indicate that ”XMRV is not a human pathogen.”

Ah. I see. Trine didn't get that quote. No harm, no foul.

Wait--not a human pathogen? Wow. That's another conclusion entirely--and it led Eric Klein, co-author of Robert Silverman on XMRV research involving prostate cancer, to respond both in a comment on Vincent Racaniello's Virology blog, as well as in an interview with longtime advocate Craig Maupin.

"But John M. Coffin, a retrovirologist and a co-author of two of today’s Retrovirology papers, told Health Blog that while his groups’ studies demonstrated that mouse DNA is everywhere in labs, none of today’s published papers ”definitively show that any prior study is wrong.”

Okay: mouse DNA is everywhere in labs, and only those who tested XMRV and ended up with a negative result somehow managed to avoid it. Check.

Not only were all those negative papers important because there were more of them, they're also more important because only they managed to avoid ubiquitous contamination, the likes of which can even be found in a box of supermarket cereal...the stuff of Dr. Coffin's nightmares.

”This is not the end of XMRV,” Coffin said"

Well, we know that Professor Racaniello retracted a quote he'd given Trine Tsouderos characterizing these publications as representing 'the beginning of the end for XMRV and Chronic Fatigue Syndrome." But Trine had quoted Huber:

"I think this is: end of story," said Tufts professor Brigitte Huber, another author of one of the papers. "It is overwhelming."

Confused yet?

Well, this is working towards the present, and, mercifully, the end. More negative/contamination papers? Of course. Now, while those of us with nothing better to do than follow ME/CFS & XMRV-related developments hadn't seen much from Trine lately (although, as I'd noted in my comments to her on the Tribune site after the web chat, she did file a piece that focused on "Chronic Lyme Disease" awhile back, one that drew a rebuke from the Knight Science Journalism Tracker blog at MIT), she did have a piece, last week, on a new development.

http://www.chicagotribune.com/health/ct-met-chronic-fatigue-xmrv-20110317,0,6116823.story

"A European research team this week reported being unable to find any evidence of XMRV in the blood of people diagnosed with chronic fatigue syndrome and their healthy peers, the latest in a stream of studies in which researchers looking for the retrovirus in the blood of both sick and healthy people have come up empty. Others have reported no evidence of the retrovirus in the blood of patients who were previously found to be XMRV-positive."

I can't even keep track at the moment, but I'm guessing that European study may have been the Erlwein et al retread, wherein Myra McClure, who last year declared that nothing on God's green earth could get her to participate in any more CFS research...published a paper that involved re-testing of the same samples used in the previous study. The one they published in seven weeks.

This time they are said to have specifically replicated the WPI's methodology.

Um, I'm sorry. The same Simon Wessely who emailed a CFS patient last year that he doesn't find the CCC to be helpful, as far as CFS criteria goes, I'll say flat-out: I don't trust that. Sorry. I don't trust your cohort, Professor Wessely, I don't trust your samples. I see no reason to trust them any more than I trust the CDC's 'Empirical' samples. And I wonder if you have any idea of the damage you have inflicted on those more severely stricken, especially that 25% ME group, with your garbage studies on your Oxford cohort patients who are able to travel regularly to your Fatigue clinics. You should think about that someday, you really should.

Ad hominem retracted.

The second study mentioned here I can't recall off the top of my head. But from the looks of this description, it would seem to speak to methodological issues, and, again, that is not something I am qualified or willing to comment on.

Lots more in this piece about...patients taking antiretrovirals. Big bad Judy Mikovits not opposing this. XMRV test sales. Negative studies. Quotes from Coffin, Stoye, Towers, along with Annette Whittemore and Vincent Racaniello.

And a mention of a recent paper that suggested that even the original finding of XMRV by Robert Silverman of the Cleveland Clinic may itself have been a matter of contamination--the first time, really, that those alleging XMRV to be a lab contaminant have directly challenged Silverman's work (this may soon become even more interesting).

No mention, of course, that Drs. Alter & Lo did a presentation on their work at NIH in late February, an indication that they stand by their findings. At this point, I didn't have any reason to think that would make it into the reporting of Trine Tsouderos, now, did I?

But do I think that Judy's got it right, and most of the rest of them, except for Alter & Lo, have it wrong?

Yes!

Am I supposed to think otherwise until I see some evidence to the contrary that makes any sense? Am I supposed to examine the past year and a half of this crap and not see a pattern that looks--at best--suspicious, beginning with the Wessely/McClure study that was somehow wrapped up so soon after the WPI's paper in Science?

Again, I and the other patients could be wrong, Judy could be wrong, all the rest. I don't know. I have hoped that we will see. But the research that has followed the Science paper begs questions that seem awfully obvious, and yet this science writer at the Tribune keeps writing pieces with the same narrative, offering up the same talking points...and utterly ignoring the concerns of the Office of Transfusion Medicine.

Well, that's okay, I suppose. A few bloggers have decided Judy's hypothesis is finished, kaput, end of story. I'm not particularly interested in naming them or linking to them, at least not here, not now. If they're right, they'll get all the credit they deserve. If they're wrong, they probably won't receive any of the scorn they will deserve, but that's okay; I accept that that's how things work, whether I like it or not.

They're not journalists like Trine, of course: but how unreasonable is it to expect that someone might actually care about learning about the differences in criteria?

Plenty unreasonable, apparently.

Amy Dockser-Marcus, WSJ Health Blog, from this past November, on the planning for the Lipkin study:

"As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that “includes everyone’s viewpoints.”

"The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients."

Amy confirmed in the comments on this piece that the study will use both Fukuda and CCC.

Gee, I'm sure the CDC was real happy about that. I mean, it couldn't have been them offering up the contentiousness, now, could it have been?

Naw.

Imagine that study moving forward studying only Fukuda? Or, if the CDC had their way, more likely, Empirical (Wichita/Georgia)?

Imagine Ian Lipkin not knowing the difference--which he didn't--and accepting that the CDC is the authority; they decide what CFS is, not anybody else.

Assuming my supposition on the CDC is correct...how close did we come to having this happen?

David Tuller, in the New York Times earlier this month:

http://www.nytimes.com/2011/03/08/health/research/08fatigue.html

I have no wish to flout copyright law, and I'm probably going to go past 'fair use' provisions with this. But it's key; it's really, crucially important, so much of what Tuller brought to the fore in this piece. So, taking into consideration the new pay wall...I'm going to quote more liberally than I normally would from this piece:

"The British scientists who conducted the (PACE Trial) research identified study participants based largely on a single symptom: disabling and unexplained fatigue lasting at least six months. But many researchers, especially in the United States, say that definition takes in many patients whose real illness is not the syndrome but depression — which can often be eased with psychotherapy and exercise."

"In studying the condition, he and other researchers exclude patients whose only symptom is fatigue, however disabling, and instead rely on a case definition that includes other cognitive, neurological and physiological symptoms. Those symptoms, they believe, indicate a complex immune system disorder possibly caused by a virus or another agent."

"No case definition is perfect; every disease has outliers. But whether a definition is broadly or narrowly drawn can profoundly affect the statistics vital for public health planning."

"The single-symptom case definition used by the Lancet authors, known as the Oxford criteria, was developed in Britain in 1991. Like the team that conducted the current study, the 1991 group included prominent mental health professionals.

"But many scientists and clinicians view a multisymptom case definition published in 1994 by the Centers for Disease Control and Prevention in the United States as the international standard.

"In addition to six months of unexplained, disabling fatigue, the C.D.C. definition requires at least four of eight common symptoms: cognitive problems, sleep disorders, muscle pain,joint pain, headaches, tender lymph nodes, sore throat and what is called “postexertionalmalaise”— a relapse that occurs after even minimal activity.

"In 2005, the agency unveiled an “empirical” case definition that recommended specific screening questionnaires and cutoff scores for measuring fatigue, physical dysfunction and other symptoms. Critics challenged these newer guidelines on the same grounds as the Oxford criteria, arguing that the questionnaires and scoring methods were too ambiguous.

"In contrast, a 2003 case definition from Canada is considered the most restrictive and is preferred by many patients. It elevates postexertional malaise to a central role in the illness and requires a range of neurological, cognitive, endocrine or immunological symptoms. In 2009, researchers from DePaul University in Chicago reported that 38 percent of patients in a study sample suffering from depression alone were given misdiagnoses of chronic fatigue syndrome using the C.D.C. screening tools but not the narrower Canadian definition."

So, again, I count three journalists who have written extensively about ME/CFS and XMRV over the past year and a half in major American publications. Guess which one didn't bother reporting the sorts of things I have highlighted in the last two pieces?

Why? Is it simply bias? Is it Trine Tsouderos' sincere vision of what this story is? Is it something else I don't want to even speculate on? I mean, I'd seriously prefer to believe it's not option C. I'd go with simple bias, based on what I have seen. But if that's true, why does that bias exist? I mean, I think I've done a fair-to-middlin' job of demonstrating it.

I really don't think it's because Trine Tsouderos is a poor reporter (she is, after all, not only well-respected, but is an award-winning journalist) or that she should be mocked because she wasn't always a science writer. But I have to say I'm kind of shocked to see this sort of bias in a journalist covering a story that, regardless of what it may look like to some, has--or at least had, if you suppose the link has been debunked--absolutely tremendous implications with regard to public health.

A story about the criminally negligent handling of a very serious disease that's really not taken seriously at all, nor is it the beneficiary of much in the way of research dollars from the government--compare:

http://report.nih.gov/rcdc/categories/

Comparisons are...well, you can't compare a disease few take seriously to any known to be 'serious.' But...I mean, we get what, $5 million a year? For what? The CDC telling us we're suffering from a disease linked to personality disorders? These are the people critical of the Canadian Consensus Criteria? For those who don't know--take a look at this:

http://www.cfids-cab.org/MESA/ccpc.html

Yeah, it's all in our heads.

Now, Trine wasn't flogging that shameful aspect of this awful story. But there is a story there, one that Amy Dockser Marcus sees, one that David Tuller sees.

It's Trine Tsouderos' prerogative to see another story. Maybe she honestly believes that the Whittemores & Judy are looking to profit off the backs of sick people just like so many others have.

This is something that some do believe, and it's so unbelievably, sickeningly wrong I don't have words for it. I don't know these people from Reno. But this I know. Even if Judy is wrong, and I don't think she is, I have come to the firm conclusion that these people are as sincere as it comes. No matter what people think of them because maybe at the height of a tremendous controversy, following a media blitz, rigorous travel schedule, a whirlwind they had never before experienced, and didn't expect...they could've chosen their words a little more carefully. Or something.

Big f*cking deal.

Judy Mikovits spoke at a 'dodgy' autism conference where many attendees think there's a link between vaccines and autism, a position mocked by many.

Oh, boy, we never heard the end of that.

Less popular than that denunciation among those who parroted it, was that someone saw fit to place her as a member of the Blood Working Group, to speak at the First International XMRV Workshop, to present at the FDA's Blood Products Advisory Committee meeting...to present, alongside Ian Lipkin, at the New York Academy of Sciences' event on Pathogens In the Blood Supply.

Apparently none of those matter. What matters is that she spoke at a conference where Andrew Wakefield also spoke.

Oh, the humanity.

Look--any way you slice it, whether the hypothesis is valid or not, these people from Reno have done more for the struggle to research ME/CFS and have it taken seriously than so many others have managed. Which is not a knock on them, the many clinicians and researchers who have cared and fought for us; not a knock on their efforts, not at all.

If anything, that there has been such a struggle speaks to the resistance they've encountered. WPI broke through, in a bigger way than just about anyone had previously. And that took a unique combination of funding, will, and science. It conferred glory that is richly deserved by many others, yet went to WPI--which ruffled feathers even within the group of people who have worked on our behalf. Perhaps understandably so.

There is a subgroup of patients who may be unable or unwilling to look upon WPI critically, which is not a good thing. Yet it cannot be worse than what we've had for...how many years?

Some of us manage to retain something in the way of an ability to think critically, and we can make our own decisions. The WPI isn't perfect; nobody is. But for every dagger thrown their way--and some may be valid--some of what's directed at them is just plain sick & wrong.

Even if XMRV doesn't pan out, I think the CCC matters now, and "CFS" doesn't go back into the dustbin. But that remains to be seen.

So...why is there what looks like bias on the part of this reporter? I mean, I really don't think Trine Tsouderos is taking cues from Peter White or Michael Sharpe!

I'm going to hold out some sort of hope that she may find a reason to approach this story from a different perspective. Jamie seems to think she will cover us fairly.

I'm not sure I share her optimism, but I'd rather do so than lean reflexively towards the negative that I've been pointed in the direction in based on what I have detailed. And which I do not believe I have taken much out of context.

I guess we'll see.

I have a problem with Trine Tsouderos's reporting on XMRV: 2 of 3

Part 1 of 3

Okay, after one “loser-length” post, here we are with another.

On the web chat’s comments I copied into the previous post? It occurred to me that I might have conveyed the impression that Trine did not adequately respond to my last two posts. In fairness I should point out that my posts were off-topic and made well after the chat was over, with the last two not going up until the day after the chat. Not long afterward, all the comments were pulled from that page, so it wouldn’t be fair to assume that Mrs. Tsouderos simply avoided my comments and questions, especially since she did respond to me directly once or twice.

I can say that a phone message I left on her voicemail following her web chat on XMRV last June was not returned, and that while I had left one comment on the Tribune site on one of her pieces at some point last year, a second was not posted, for whatever reason.

Given what she did offer the other day as a response to me, and others, I would be interested in seeing a response, but who knows? Maybe I’ll get one at some point. Maybe I’ll get one to THIS. We’ll see.

Lastly, before I get back to the topic at hand, a reminder that I am trying to do this in good faith, with as little snark as possible, as much fairness as I myself can muster, and with no animus whatsoever directed at Trine Tsouderos as a person or a journalist. And in spite of what I see as unfairness in her coverage, I don’t want to see any ad hominem attacks in my comments sections; if I do, I’ll remove them, if I can figure out how. As it is, friends of mine are having difficulty commenting presently, so I’ll have to take a look at that, when I get a chance.

Now…moving forward…the last blog ended with my analysis of Trine’s piece on Dr. Oz.

Some weeks later, in mid-June, we were graced with "The Push And Pull Over Chronic Fatigue Syndrome."

Let's see...

"Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection."

That would be the three I previously mentioned, the Brigitte Huber study, and, most likely, the CDC study.

"Trying to confirm the finding."

"Grave doubts."

(This is where I begin taking things "out of context," folks.)

Unmentioned is that none studied the same patient cohort as Lombardi et al—CDC 1994 Fukuda International Criteria (which, flawed as it is, and it’s the most-used, is not the worst of the various criteria), AND the far-stricter (and far more specific--I don't think one can easily describe this as a diagnosis of exclusion) Canadian Consensus 2003 Criteria (CCC). Most XMRV studies on CFS patients since Lombardi et al have been on Fukuda-defined cohorts, with at least one on the even-broader Oxford cohort, and one on the precursor to Fukuda—CDC’s 1988 Holmes criteria. That criteria is probably the closest to the CCC, and, probably not coincidentally, the study using the Holmes CFS cohort was the only other one that did not produce a negative result.

So, all in all, I think there’s some significance here, an issue to be considered. Granted, the question of why no study besides Lo et al found XMRV/non-XMRV MLVs in healthy controls is a thorny one, but there we get into issues I choose not to speak to (some who do, offer explanations that sound, at the very least, somewhat credible to my admittedly untrained eye). Some patients do—and a few do possess some relevant knowledge and qualifications, but probably not all who choose to argue with scientists in comments threads and on message boards. That aspect of what I see as a cacophonous mess doesn’t thrill me, but what can you do. I stick to what I’m comfortable speaking on, and others will do what they feel best. I think the discussion of the cohort issue is valid and under-represented in talk of assays and primers and different PCR techniques.

But, although I feel it’s an issue that deserves to be aired more than it has been, the truth is, I have no idea how significant it is. Really. But the more this goes on, the more days have passed on the calendar where no research team has chosen to study patients as sick as the patients in the Science study. Does Trine Tsouderos know anything about the Wichita or Georgia cohorts that the CDC study, and have been for years? I realize this and other negative studies have no bearing on the findings in healthy controls, as they all find zero, zip, nothing. Still, I pose this question. Does she know the first thing about it? These people are 'unwell!'

Does she know that these patients were diagnosed with CFS after answering 'yes' when a random phone call came in from a government researcher asking if they were 'fatigued,' and having little more than a basic workup at a hospital?

http://www.biomedcentral.com/1741-7015/3/19

“At least a quarter of those suffering from CFS are unemployed or receiving disability because of the illness”

As many as ¾ capable of employment? That’s not the illness I know and live.

Take a look at the comments on that piece of, um, research. (Some subsequent research, especially by the CDC, which cites that paper...the methods by which they assembled their 'population base...' oh, brother...) I wonder, considering her apparent ongoing interest in writing about CFS, if Trine Tsouderos has?

Does she know that Leonard Jason has published research showing that as many as 40% or so of these patients are likely not CFS patients, but suffering from depression (which, as many know, can produce "CFS"-like symptoms)?

Did she care enough to find out before writing about this?

Is this some piddling detail, to compare patients bedridden for years with folks suffering from idiopathic chronic fatigue, either capable of at least part-time work in many cases, or, at the least, of attending 'fatigue clinics' on a fairly regular basis--physical commitments not remotely within the physical reach of CCC-defined ME/CFS patients like the ones in the Science study?

I guess so.

As an aside, this should not be shocking in a field where the sickest patients are almost never tested, where questionnaires are routinely used in lieu of objective physical testing (much of which the CDC considers 'unhelpful' in diagnosing CFS), and where patients who begin a study at the "most-fatigued" end of a "fatigue scale" cannot provide any data if in the course of the study, they get worse.

Where patients unable to continue participating in "treatment" studies aren't counted in final results if they drop out, where researchers are advised to steer clear of this area of study, where such research is ridiculously underfunded, and where most of the recipients of research funding are...okay, enough, I'll stop there.

The CCC is a clinical criteria, not a research criteria, granted. Does that mean nobody besides WPI can assemble a cohort?

"In response, Mikovits has accused other researchers of bias and amped up efforts to sound the alarm over what she views as an epic health crisis. Invoking the world's slow response to AIDS, she warned that XMRV infection "could be the worst epidemic in U.S. history." Though her published findings address only chronic fatigue syndrome, Mikovits also has publicly linked the retrovirus to autism, atypical multiple sclerosis and other disorders."

Wow--Judy must be a horrible person. She's gone off the rails (wasn't that said by the guy who called a patient a 'loser?' Not unprovoked, but still…outrageous.). She's another "Wakefield." She's this. She's that. Oh, the crimes she has committed against science and medicine.

She stomps on puppies and kittens, too, while her critics keep repeating the mantra that science will sort it all out in the end. Which makes sense, of course.

Unless you have ME/CFS, in which case “Science” has accomplished what, exactly?

Since Incline Village?

Since Royal Free?

Since Los Angeles in 1934?

I have to admit that when what Tsouderos describes in this piece was transpiring, I was not happy to see it: I cringed at some of it. I found it difficult to give Judy Mikovits the benefit of the doubt on it. I had issues with the PR approach that WPI seemed to be engaged in.

Since that time, I believe the public behavior and actions of those criticizing Mikovits are far more egregious than anything anyone can accuse her (or anyone else at WPI) of. Period.

Perhaps it was not the best move not to criticize the other researchers or the other research (not that this stopped those who have offered their own criticisms, apparently without fear of rebuke). But how much credence are we to give to the seven week study Wessely seemingly snookered Myra McClure into?

(Of course, now, it doesn't really seem that way, but who reading this remembers McClure's interview in Australia a year ago where it sure sounded as though she were attempting to distance herself from Wessely's influence on the study?)

Was Jonathan Kerr working with untold pressures that may have influenced that study? (Take a look at the 10th paragraph)

And wouldn't some people find it strange that the BMJ chose to, in their own words, 'fast-track' the negative study they published, versus perhaps having reviewers take a closer look at it?

The headline is “Let’s Proceed With Caution.” Yet they “fast tracked” it.

Does THAT make ANY sense? Especially when peer review on Erlwein et al was all of three days on a seven-week study? (Groom et al, which, it should be pointed out, was financed in part by the MRC—guess they don’t only invest in psych research after all—underwent a review period of one month)

As to XMRV being the 'worst epidemic in U.S. history...' Unless Lombardi et al is a false finding, 10 million, infected, and asymptomatic. The Harvey Alter paper? Double that number.

No, if they represent completely different findings, as some have suggested, we don't add together the percentages on the infected controls. Yes, we are told, these are two completely different events…which would mean (assuming the findings of Lombardi et al and Lo et al are valid) three and a half percent healthy controls infected with XMRV and 6.8% healthy controls infected with non-XMRV MLVs, which would bring us to 10%, 30 million Americans? Hell no! Why, that would be unscientific.

What else? Oh, yeah--Judy Mikovits publicly linked XMRV to other conditions, based on unpublished research.

Okay...do her statements--one that I heard was qualified, when offered, that it represented speculation--represent unsupportable, irresponsible claims? I don't know. Maybe.

Maybe not.

Maybe she made a ‘claim’ she shouldn’t have.

In my view, any such claim is mitigated, even if only slightly, because I actually have the audacity to believe that, thanks to the Whittemores, Judy Mikovits sees letting us rot as being worse than risking irritating other scientists who haven’t done much to change our status quo, which, let's be honest, almost nobody gives a sh*t about.

But we already have a sense of Judy Mikovits. As seen by Trine Tsouderos.

"Meanwhile, some people with chronic fatigue syndrome already are getting tested for XMRV and taking toxic drugs intended to treat the retrovirus that causes AIDS — an idea Mikovits does not endorse but declines to oppose."

For every negative remark one might aim at this revelation, I will counter with a rebuttal, including statements above. And I would do so knowing that taking ARVs might not be the best idea--might be completely wrong, and for a variety of reasons. People take controversial drugs off-label. Get over it; we're not talking about great numbers of patients here, or there really would be a story. If this is the worst wrongdoing that ever occurs in the history of our Republic, it does not compare to how patients have been mistreated.

Meanwhile...although, from what I can tell, few believe that any great numbers of patients are taking these drugs, anecdotal evidence does suggest that some of these patients are actually improving. Not miraculously, mind you, it can't be claimed that such controversial treatment is curative, or anything, but, yes, improving.

I'm with Judy on this: not endorsing it while declining to opposing it--we're talking about desperation that's probably just about impossible to describe, not some gladhanding pharmaceutical misadventure--sounds about right to me.

In fairness I have to say the rest of this piece is relatively balanced. At least compared to what was to follow. Although, to be truly fair, it's worth pointing out that the very same day, the Wall St. Journal had this...

...that's a very different piece.

Now, something interesting happened shortly afterward. The slides from a presentation Harvey Alter gave in Croatia at a blood products conference were leaked by a European publication. They indicated that Dr. Alter had undertaken research that, in his words, showed the findings WPI published in the Science paper to be 'likely true, despite the controversy.' Most of you reading this probably know all about this. And it was pretty stunning news, especially since we already knew that Dr. Huber had pronounced XMRV to be a contaminant, and I don't think there was one ME/CFS patient who thought CDC would ever test a CCC cohort (would they, even now, if not for the Lipkin study?). Which means nobody really had any inkling if there were any studies forthcoming showing a positive result. So this was a startling report.

Now, I have to point out that this proves nothing, and further research is needed. But this was a pretty significant development. And it rated a blog post by Amy Dockser Marcus in the WSJ.

What happened next? Of course. The CDC paper and the NIH/FDA paper were both withheld.

Yet the following morning (5 am EDT or thereabouts, or was it 4? Details, details…), the CDC's negative paper was published, while the other paper was not...for nearly two months.

It gets a trifle redundant posting everything the WSJ has run; let's just say they're on top of it. But the day after, this appeared in Nature News:

It had a very interesting observation:

"If the PNAS paper is published, it will be the first published study to back up the work reported last year by Mikovits.

"This would be welcome news to patient advocates who are concerned about how patients were classified in Switzer's study. Fred Friedberg, president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), says the CDC used an assessment that could lump together those with chronic fatigue syndrome and those with other conditions, such as major depression. And Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, notes that the study included only three patients with 'acute onset' chronic fatigue syndrome; the rest had gradual onset of the condition. "That is a very low number," says McCleary. "If you're looking for a virus, it seems like you would have wanted to screen [people with] the acute cases."

Kim McCleary of all people points this out (acute cases in a chronic illness? You don't say...). Now, I'm not a fan of the CAA, or its CEO, but it would be unfair to not point out when she offers up a quote that we patients find helpful, even if it was in true 'inside voice' style.

Conspiracy theories about what happened with the withholding of both--sorry--the paper that actually meant something...no, thanks. It's been too long, and this isn't a short blog to begin with. No comment, even though that excerpt began with 'if.'

A list of the BS we saw from the CDC over the summer is notable, but not the point of this blog.

What did the Tribune family of newspapers do during this time?

Well, on July 27th, they ran a reprint of the piece they published on June 14th.

Is this verbatim? A quick skim...sure looks like it. So...why?

Why not mention the slides presented in Zagreb? Or the implications for the blood supply?

Or that both XMRV papers were withheld? Or, most strangely, that the CDC paper had been published nearly a month before this piece was recycled?

I'm going to take a wild guess that Trine Tsouderos is not to blame for this. I mean, does this make her look good? Uh...no. So it's entirely possible that she was embarrassed by it, while some of us were befuddled by it, containing absolutely no new information on a story that had seen explosive developments in the six weeks since the original had run.

Developments that included ME/CFS patients being banned from blood donations in several countries, including Canada, Australia, New Zealand, and, eventually, the UK.

Oh, well.

Four more weeks pass. PNAS published Lo et al on August 23rd. Harvey Alter states that their findings are 'highly confirmatory' of the WPI's XMRV paper.

Trine Tsouderos was not the only one who did not cover this; see my previous blog for a detailed rundown on how sparsely it was covered in the UK.

But, wait--XMRV was somehow necessary to hammer Dr. Oz; Judy Mikovits is hyperbolic, or worse; patients are taking dangerous antiretrovirals. Of course, I can't know if Trine Tsouderos wanted to cover this & was not allowed the assignment.

I'll tell you what, though: if I'd written what she'd published, up to that point, on XMRV, I sure would've wanted to cover it. Badly.

But I'm not a journalist, so what I would do is not necessarily relevant.

Now, there is the issue that, wait a second, Lo et al did not detect XMRV in CFS patients.

They only detected something very, very like it.

This distinction has led a number of bloggers to announce that this, um, hair-splitting, meant that the XMRV/CFS connection was...disproved! (Some virtually dismissed it as meaningless, which is…um…terrific. For them. Really.)

Of course that paper received widespread coverage, at least outside the UK (and Chicago). There was some fair coverage of the First International XMRV Workshop at the NIH in early September, as well. But what did we see next from Trine?

"Five different teams, including one led by the U.S. Centers for Disease Control and Prevention and another from the National Institutes of Health and the U.S. Food and Drug Administration, have published papers failing to find such evidence.

"One of the teams, from the NIH and FDA, found evidence of a different retrovirus, one also associated with mice, in the patients, but nobody knows what that could mean.* [Updated Sept 30, 12:35 p.m.: In an earlier version of this article, the reference to the "different retrovirus" omitted the word "also," implying that XMRV is not associated with mice; it is.] It does not confirm the original paper."

(Emphasis mine)

No mention that no teams studied the same patient cohort. No mention that the lead author on the paper emphatically stated several times the exact opposite of the last sentence I excerpted. Um, I dislike the idea of stooping to an argument that appeals to authority, but...well, I don't have to even go there. What's clear is that Trine Tsouderos has decided that a paper whose publication she did not cover, does not quote from, and does not list the names of even one author on it, has flatly rendered a conclusion that...well...

"It does not confirm the original paper."

Not "might not." Not "probably does not." Not "in spite of remarks issued by its authors..."

"Does not."

Did she reach out to Professor Racaniello for his opinion on this?

No.

She did, however, devote the second half of the piece to something advancing the opposite point of view.

"One esteemed retrovirologist, Dr. Robin Weiss of University College London, has just published his thoughts on the situation. They are worth a look."

Unlike Lo et al. That wasn't even worth a mention, let alone a link as was provided directly to the Weiss paper.

Weiss' paper states:

"Most recently, to add to the confusion, a new paper [6] reports an association between CFS and a different retrovirus - a report erroneously described in some of the press coverage as confirmation of the original report of Lombardi et al."

(emphasis mine)

When Judy Mikovits criticizes other researchers, oh, boy. Look out.

When Robin Weiss does it...

...crickets.

Now, I suppose I wouldn't know a double standard if I fell over it, so I should probably just move on. I could offer all sorts of silly reasons why this looks like one to me, but...

"I would be happy to accept that if XMRV is associated with CFS, so could polytropic MLV be. What I find extraordinary, however, is that only XMRV was found by Lombardi et al. [1], whereas only polytropic MLV was detected by Lo et al. [6]. Given that the samples analyzed by Lo et al. were collected over several years from persons with no contact with each other and widely dispersed across states in New England [6], it does not make epidemiological sense that the two types of CFS-associated MLV segregate according to the laboratory performing the tests."

Well, again, as a layman, I cannot comment on this, except to mention that I've long heard that CFS represents an epidemiological nightmare, for decades, in no small part due to differences in diagnostic criteria. But while Weiss dismissed the differences in criteria fairly brusquely, he nevertheless found it easy to speak on what 'does not make epidemiological sense' in CFS.

"It is noteworthy that positive findings are often published in high profile journals, while the negative ones find their way to specialist journals. In the case of XMRV, two of the negative reports were accepted by BMC Biology's sister journal Retrovirology [4,5], which is becoming well established as the standard-bearer of its field. The recent paper by Switzer et al. [5], which examined properly blinded samples, perhaps has too modest a title: 'Absence of evidence of XMRV virus infection in persons with CFS and healthy controls in the United States'. I would go further and suggest that they found firm evidence of absence."

Well, there may be a fair point in this paper about 'rumor viruses.' But...'persons with CFS?' did Weiss read Switzer's criticism of the CCC in that paper?

"The 1994 International CFS case definition and the Canadian Consensus Criteria are different and do not necessarily identify similar groups of ill persons. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy. The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients [11]."

Please, someone correct me if I'm wrong: Tender lymphadenopathy is one of the eight symptoms beyond fatigue, of which four are required, according to the CDC's (Fukuda) Criteria.

If I'm not wrong, please, nobody correct Dr. Switzer or the journal Retrovirology; it's already been tried, and I honestly don't think they're interested, in spite of what appears to be a rather obvious contradiction.

Never mind all the reasons why it's just absolutely surreal that an expert researcher would use the CCC to suggest that a patient is exclusionary for a CFS diagnosis. As they say here in the big city, that horse is out of the barn, even if it leaves us with some unanswered questions.

Beyond all this, we're supposed to accept that if XMRV and the related viruses detected by Alter & Lo are lab contaminants, then...only Alter/Lo and WPI (as well as Robert Silverman at Cleveland Clinic and Frank Ruscetti at NCI) are the ones who contaminated their samples; everyone else managed to avoid this problem except the people who were, yes, published in the higher-profile journals. And Huber, who, apparently recognized it.

(On the Huber study...patient samples were provided by Dr. Susan Levine, who currently sits on CFSAC. I have been a patient of Dr. Levine's and I respect her. But it's worth pointing out that even the Huber study was done on samples from a cohort defined by CDC criteria. That is not a knock on Dr. Levine, only an observation; there may well have been some CCC patients in that cohort)

Only Mikovits/Silverman/Ruscetti (but especially Mikovits—always) and Alter/Lo were blind to contamination—and although we’ve heard countless times over the past year or so not only how easy it is to contaminate samples in a study, but also how ubiquitous this contamination is—from a variety of potential sources—it wasn’t a problem for any of these other labs.

I'm sorry...scientist or no, that doesn't really make sense to me. And that's said by someone who has maintained all along that if the XMRV link to CFS is disproven, than we all have to live with that; and I do not fear reality. But in expecting reality...well, why am I writing this? It's because what I've seen looks like an awful lot of bias.

So a debunking of the association, when it's purportedly based on those with suspect cohorts knowing what they're doing, while those with the CCC patients (or the closest thing to them) don't...no, I'm sorry, that really does not make sense. How many doctors even know what the CCC is, and how different it can be from Fukuda, and how much worse it can be? A few dozen?

Everybody else gets it wrong, but we're supposed to go with those who aren't even willing or able to assemble a proper cohort.

Okay.

So what happened next?

A smattering of negative XMRV papers, mostly studying possible associations to prostate cancer and autism. Maybe there was a positive paper in there somewhere on prostate cancer. I can't recall at the moment & don't keep a handy list on those. Sorry.

Next were two October reports on negative studies:

"Before this week, six teams, including scientists from the U.S. Centers for Disease Control and Prevention, the National Institutes of Health and the U.S. Food and Drug Administration, have reported in scientific journals that they were unable to find XMRV in patients with chronic fatigue syndrome."

Am I boring anybody?

Yes, it was a negative study. And, once again, it was...well, this cohort was "revised CDC."

What does that even mean?

Is it Fukuda, which is "revised" from Holmes? Or is it Empirical, which is "Revised Fukuda?”

Well, either way, it's most definitely not CCC, but here's one byline I have come to associate with zero focus on such an issue.

Next?

Title: "New study casts doubt on retrovirus link to cancer and chronic fatigue syndrome"

Let's see--is the selling of the test mentioned? Yes. Is the issue of the hordes of CFS patients apparently taking antiretrovirals mentioned? Yes. Is it mentioned that the negative studies are piling up? Yes.

Is it addressed that "Chronic Fatigue Syndrome" is in the headline yet the study being reported on was done exclusively on prostate cancer?

No.

Granted, it's my understanding that the reporters don't write the headlines, but still...you know, if I didn't know any better...I'd say this is becoming familiar.

But not tiresome!

That’s all for tonight, folks, but while I’m sure you’re breathlessly awaiting the final installment of my airing of this grievance, let me just mention that there is a comment someone tried to leave on part 1 but couldn’t; so here is a link to her blog.

Part 3 of 3…to be served up shortly.

I have a problem with Trine Tsouderos's reporting on XMRV: 1 of 3

For nearly a year now, I have had a problem with the reporting of Trine Tsouderos on a topic that I follow, mostly because of its relevance to me (and many other people) personally.

I do not wish to have a problem with Trine Tsouderos as a human being; my purpose is only to point to aspects of her reporting I find questionable. There is no intent to make this personal, though I probably have not been able to completely avoid snark, and, additionally, what I have written could, quite understandably, be taken personally.

But this is a big problem I have seen unfold for a long time now, and, though previously unable, I have now managed to write something that, hopefully, sufficiently expresses my issues with her reporting. Which is not to say that it is an attack on journalistic integrity--as a matter of fact, I hesitate to label Mrs. Tsouderos as biased, although I certainly perceive bias in her reporting. However, given what I've seen, I honestly don't know what other conclusion I can logically and feasibly draw.

I have picked apart many of her columns going back nearly a year. My writing process is somewhat fragile due to the ME/CFS issues of strength, stamina, concentration, focus, and general cognitive dysfunction (though as a symptom that is probably milder for me than for many other fellow patients). If someone reading this who does not agree with my stance (which, try as I might, I cannot entirely rid of my own personal bias), I invite you to pick apart this blog as I have picked apart the columns in question. That's only fair. I'm sure there are mistakes, and maybe I've left out important details myself. I would suggest avoiding arguing that which I avoid arguing, however.

So...earlier this week the Chicago Tribune had a web chat conducted by reporter Trine Tsouderos and Dr. Paul Offit, on the subject of vaccine safety and the various controversies involved.

Although I am finding the blogs of Dr. Jamie Deckoff-Jones to be increasingly intriguing, this is not something I know a lot about. And if I have to choose between being 'pro' or 'anti' vaccination, I'm 'pro.' My mother is a polio survivor. I believe they're necessary. And I can't say I'm a fan of this or that vocal autism activist organization.

I will say that it seems to me that anecdotal evidence may suggest that there are more problems in the recent past than was the case in prior years. Is that anecdotal evidence valid? Are there more issues with vaccines--not necessarily because of their 'safety,' but possibly due to a previously unknown, unforeseen development involving how the human body deals with vaccination? I don't know, and I'm guessing experts would say no. This is not my area. And I have always felt that one needs to err on the side of the many (as long as we're able to steer well afar from eugenics, naturally). If vaccines are, say, 99.9% safe, is there a reason not to vaccinate? I don't think so.

But what about that .1%? Everybody's different; can we say for sure there wasn't always a miniscule percentage of people who would experience a problem due to vaccinations? That can be a lot of people, right? Well, honestly, I have to go with the benefit of the 99.9%. Can 100% safety and efficacy ever be proven? Probably not. And I'm guessing no evidence exists to suggest that this alleged issue with perhaps .1% (or whatever fraction) of vaccinated humans ever happened. So maybe it never did; can't discount that. But for the sake of argument, bear with me; I float the premise that there has always been a tiny percentage of people for whom vaccines may have caused harm. But that this was a risk well worth taking, not that one can dismiss it as acceptable collateral damage; probably something not even serious enough given the overall benefit to study. Grant me that, for the moment.

Now, is it possible that what once may have been 99.9% safety is now slightly lower? Maybe significantly lower? Are there just a lot of people who have been led by the likes of Jenny McCarthy whose voices seem louder due to the internet? Or is there a genuine issue worthy of further examination, not to be framed by the 'vaccines/autism' poisoned debate, far from the radioactive spectre of Andrew Wakefield, a different approach entirely?

That's a discussion for trained professionals, but I think maybe it's worth having. Especially given what Jamie is working on. I have a lot of respect for her, in many ways. Her recent views may be a bit strong for some, but I am interested in having an open mind on this.

Now...this web chat? Jamie posed a question, and Dr. Offit was probably not as civil as he could have been in his response. Jamie has reposted this exchange on her blog, so I invite you to take a look at it there. Or here:

http://www.chicagotribune.com/health/ct-health-chat-vaccines,0,7750657.htmlstory?ref=notif&notif_t=open_graph_comment

Of course, XMRV came up. Dr. Offit:

"The xenotropic murine retrovirus story as a cause of neurologic disease, including chronic fatigue syndrome has clearly fallen apart."

Now, if your only knowledge of XMRV, especially as it relates to a reported association with Chronic Fatigue Syndrome, comes through the reporting of Trine Tsouderos, this might seem like a perfectly reasonable statement.

To many of us who follow this story closely, it is anything but.

Following the chat, there was a space on the above-linked page for reader comments. Those comments have now been removed. However, I chose to save mine, as I have long wanted to question Trine about her reporting. I am rarely able to write as I would like, so taking the time and spending the effort on emailing her has not seemed like a viable option for me.

Here are (most of) the relevant comments in an XMRV-related sub-thread (most of the comments, naturally, were on-topic). I chose to edit others' out for the sake of their privacy though they offered some equally good points; as a result, this may read somewhat choppy, but please bear with me.

Trine Tsouderos · Tribune Company

In the end, we'll find out. I have not stated that XMRV is over. The evidence is mounting for one conclusion, but you never know until all of the questions are answered. Both Drs. Coffin and Racaniello told me, as reported in my last story, that the door remains open. So we'll see. There are big studies underway that should be able to sort it out, hopefully sooner than later.

Trine Tsouderos · Tribune Company

Okay folks, I don't want to turn this chat on vaccine safety into a chat about XMRV/CFS. I had one last summer for anyone who wants to read the transcript. I think my thoughts remain the same, except that now there is more evidence now than there was then against an XMRV-CFS link: http://newsblogs.chicagotribune.com/tribnation/2010/06/noon-live-chat-on-xmrv-and-chronic-fatigue-syndrome.html

Trine Tsouderos · Tribune Company

Find me where I reported it is closed. Over and over I have said it is not. I'm waiting for the coin to land. And no, you have not exhausted my knowledge! You have exhausted my time! ;) I'm heading out. Thanks for sticking with the chat, and for asking questions. I know we don't see eye to eye, but that's okay.

Trine Tsouderos · Tribune Company

Only in so far as it relates to vaccines. The chat was about vaccines, not the XMRV/CFS link specifically. But I was happy to chat about it here with you and Jennifer because I know it is an intensely important issue and I have been immersed in reporting it for a long, long time. Anyway, thank you both for chatting with me here. And now I really really have to run. Thanks!!

Jay Spero · New York, New York

That's a convenient conclusion to come to when there's a certain study I don't believe you found worthy of coverage. Perhaps I missed it.

Did you cover the Harvey Alter paper?
Or when the Red Cross banned blood donation from ME/CFS patients?
Or when the FDA voted 9-4 to recommend that the FDA should enact a similar ban?
Or anything else that transpired at the FDA's Blood Products Advisory Committee meeting in December?
Or the presentation by Alter, Lo & Gill at NIH a month ago?

Because if you did, I sure didn't see it.

I saw lots of coverage of XMRV & ME/CFS that would suggest that none of what I have mentioned means much.

Is that how consensus is built in science?

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  Trine Tsouderos · Tribune Company

  Hi guys, again. To address these points: Lo et al did not find evidence of XMRV. Public health policy is not scientific evidence.

  Like · Reply · 3 hours ago
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  Trine Tsouderos · Tribune Company

  And no, they did not show full integration into the human genome. They showed one side only. And that paper is in question.

  Like · Reply · 3 hours ago
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  Jay Spero · New York, New York

  This is a rationale for not even covering that paper given all the coverage you've given to those who characterize the XMRV hypothesis as faulty? Harvey Alter stating repeatedly that their findings were confirmatory of Lombardi et al not even worth covering? If those findings are not valid, surely it would have been worth it to point out why, wouldn't you say?
  
  Yet you have simply ignored this no matter how many times it's been raised in your comments sections. Why?
  
  Did you have any questions about how the scientific evidence published in Erlwein et al was submitted as a completed study within seven weeks after the earliest date at which the study could have even been proposed?
  
  Bother asking Jonathan Stoye about the samples that were sent to Jonathan Kerr for the Groom et al study but which were never tested or published? Or anyone else, for that matter? In your coverage of all the negative studies, did you even know that more than 100 samples had been sent from a cohort closer to Lombardi et al than any other, but not used, the whereabouts of which are currently unknown?
  
  Lo et al was not worth mentioning because 'that paper is in question,' yet we're supposed to accept there are no questions about the other papers? You can't name one paper that tested the same cohort as Lombardi et al--not one. Do you even know anything about the differences in these patient cohorts? One woud think you might given how often you've covered this issue, but until covered in the NYT a couple of weeks ago, I haven't seen any mention of this issue anywhere except perhaps the WSJ.
  
  Meanwhile, if the contamination papers were not themselves in question, why would Alter & Lo have presented on their findings at NIH just a month ago?
  
  I'm afraid I do not understand how you have decided that negative and insulting coverage of Judy Mikovits has been ground worth treading repeatedly yet mentioning Harvey Alter even one time in any piece you have filed, to my knowledge, has somehow not been deemed worthy of your time.

  1 · Like · Reply · 2 hours ago
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  Trine Tsouderos · Tribune Company

  http://articles.latimes.com/2010/sep/30/news/la-heb-chronic-fatigue-09292010

  Like · Reply · about an hour ago
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  Trine Tsouderos · Tribune Company

  For anyone wishing to read over my work on CFS and XMRV, here are my stories and blog posts:

  Like · Reply · about an hour ago
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  Trine Tsouderos · Tribune Company

  http://articles.chicagotribune.com/2010-06-07/health/ct-met-chronic-fatigue--20100607_1_chronic-fatigue-syndrome-xmrv-autism

  Like · Reply · about an hour ago
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  Trine Tsouderos · Tribune Company

  http://www.chicagotribune.com/health/ct-met-chronic-fatigue-xmrv-20101220,0,5526992.story

  Like · Reply · about an hour ago
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  Trine Tsouderos · Tribune Company

  http://www.chicagotribune.com/news/opinion/letters/chi-101223racaniello_briefs,0,1990620.story

  Like · Reply · about an hour ago
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  Trine Tsouderos · Tribune Company

  http://www.chicagotribune.com/health/ct-met-chronic-fatigue-xmrv-20110317,0,6116823.story

  Like · Reply · about an hour ago
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  Trine Tsouderos · Tribune Company

  http://articles.latimes.com/2010/oct/25/news/la-heb-retrovirus-study-20101025

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  Trine Tsouderos · Tribune Company

  http://articles.latimes.com/2010/oct/13/news/la-heb-xmrv-chronic-fatigue-syndrome-20101013

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  Trine Tsouderos · Tribune Company

  http://newsblogs.chicagotribune.com/tribnation/2010/06/noon-live-chat-on-xmrv-and-chronic-fatigue-syndrome.html

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  Trine Tsouderos · Tribune Company

  Okay, I think that's it.

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  Jay Spero · New York, New York

  Sept. 30th: "It does not confirm the original paper." No mention of authors or that not only in Zagreb the previous May but also during a press conference held upon release of the delayed paper that the paper's authors claimed exactly the opposite of your statement.
  
  You could be right and they could be wrong, of course. But you stated flatly that which was the opposite conclusions of the researchers, who you still refuse to so much as name, let alone offer any mention of reaching out to for comment.
  
  June 7th: We'd already read your piece on Dr. Oz--thanks fot the tip that one might want to employ some critical thinking if one was to choose to watch whatever it is he airs in the name of medicine. As Hillary Johnson previously pointed out, any legitimate concerns about patients taking antiretrovirals were offered without so much as a guess as to how many patients might actually be doing this. 9 months later, does anyone yet have an idea as to what sort of numbers we're talking about with regards to this miscarriage of medicine?
  
  December 20: The contamination papers are worth reporting on; the FDA BPAC meeting was not. After nearly half a dozen nations decided that patients diagnosed with ME/CFS should not, as of 2010, be allowed to donate blood any longer. The American Red Cross bans us on December 3rd, followed by the vote at the BPAC. Not worth mentioning. Hmmm.
  
  March 17th: Still no mention as to why the Office of Transfusion Medicine might have been interested in researching this virus in the first place. Still no mention that the viruses--oh, sorry, they're not XMRV, check, which begs the question as to why we would have been told that the WPI findings were 'likely true, despite the controversy,' although not in the ChiTrib--were found in nearly 7% of healthy controls.
  
  Who just happened to be blood donors.
  
  What was that you were saying about 'scientific evidence' as opposed to 'public health policy?' If it's published in PNAS it's not scientific evidence because...why? Because it wasn't exactly the same virus, it was only just some other virus that's very, very, very similar, and also happens to cause leukemia in mice?
  
  Well, it's still legal for ME/CFS patients to donate blood, even if the American Red Cross won't allow it.
  
  I will refrain from advancing that line of thought any further, and will simply point out that you chose not to respond to (save noting your ONE mention of Lo et al) even one point I have raised.

Jay Spero · New York, New York

I'm afraid I have another question or two to pose.

Trine Tsouderos will be speaking at the New York Academy of Sciences this coming Monday, correct?

http://www.nyas.org/events/Detail.aspx?cid=55b35107-0a35-4a14-9d61-485a6447e6e8

From the abstract: "Tsouderos will also talk about the journalistic convention of “balance” and why it is fine for reporting on people’s opinions about the mayor, but misleading and outright dangerous when reporting about medical issues."

I will leave it to anyone reading this (and having read the points I have raised above) to decide if Trine Tsouderos is a good example of a journalist who should speak on the issue of 'balance.'

I offer this because if--and as a layman I am not qualified to comment on the evidence--if those alleging contamination are wrong, then we have an issue with a potentially infectious retrovirus linked to prostate cancer and ME/CFS--at the least--being found in something like 5% of the healthy blood supply.

Whether it's "XMRV," something very, very like it, or a combination.

Trine Tsouderos has not said those alleging contamination are correct. But I submit that her reporting on the issue has been, with all due respect, rather one-sided.

Would it really have been false balance to reach out to Harvey Alter for comment? Seriously?

Then there was the recent piece on "Chronic Lyme Disease."

http://articles.chicagotribune.com/2010-12-08/health/ct-met-chronic-lyme-disease-20101207_1_lyme-disease-raxlen-medical-boards

Chronic Lyme Disease may well be a dubious diagnosis. I don't know. There may be a difference between people affected after initial short-term antibiotic therapy, people affected long-term, and those who embark on a course of long-term antibiotics, which not every patient does.

But it strikes me that there would have been room somewhere in this piece to mention that the 'dubious' diagnosis was being studied at Stanford University.

http://chronicfatigue.stanford.edu/

Is Stanford all of a sudden a house of woo? Would it be a legitimate response were Tsouderos to offer that this website had not been launched at the time the piece was written?

Perhaps.

But would it have been so difficult to find out that Dr. Montoya had this in the works? Was it a state secret, or something two reporters for a major metropolitan newspaper might have been expected to have found out about in their work on a lengthy piece such as this one?

I don't know.

But on the issue of balance alone, the Stanford angle aside, someone else had a bit of a problem with this piece.

http://ksjtracker.mit.edu/2010/12/16/chicago-tribune-off-balance-on-chronic-lyme-disease/

Another woo-ster?

Perhaps not.

Lastly, at least for now: it's pretty big news if the Chicago Tribune classifies "Chronic Lyme," possibly correctly, as a 'dubious diagnosis." Right?

As a matter of fact, if one does a Google search for "Chronic Lyme," and then clicks on "News," so as to filter out anything Google might consider to be, say, less than newsworthy (such as dodgy blogs, etc), not much comes up.

http://www.google.com/#q=%22chronic+lyme%22&hl=en&tbas=0&prmd=ivnsb&source=lnms&tbs=nws:1&ei=NiKKTZC0MobJgQeVq-SpBg&sa=X&oi=mode_link&ct=mode&cd=4&ved=0CCMQ_AUoAw&bav=on.2,or.r_gc.r_pw.&fp=3f52c8f23d9530b1

18 results.

But a month ago there was a news story surrounding a study that came out involving proteins found in the spinal fluid of ME/CFS patients.

And...Chronic Lyme patients.

Interesting.

It was covered by Katie Couric on the CBS Evening News.

There were an awful lot of stories that went out around the country and are on the websites of countless news outlets--all with the exact same title.

"study finds clue to chronic fatigue, chronic lyme"

Chronic Lyme--which is a dubious diagnosis, right?

http://www.google.com/#hl=en&sugexp=ldymls&xhr=t&q=%22study+finds+clue+to+chronic+fatigue,+chronic+lyme%22&cp=38&qe=InN0dWR5IGZpbmRzIGNsdWUgdG8gY2hyb25pYyBmYXRpZ3VlLCBjaHJvbmljIGx5bWUi&qesig=1d0MVBxIIdytZxpT3QIxbg&pkc=AFgZ2tmVXIse-N1ZtSRnhVNOuQzDNBn_4Rxj875hMDeHo-iyFyjeD-3rAaqDDMsaSDSSpQmbUOl9R0PN4PwAnOnQNCYc05QvSw&pf=p&sclient=psy&source=hp&aq=f&aqi=&aql=&oq=%22study+finds+clue+to+chronic+fatigue,+chronic+lyme%22&pbx=1&bav=on.2,or.r_gc.r_pw.&fp=57d507cc8933615b

A day or two after the study, there were a few thousand results for this story's title, in quotes. A month later, as is the way of the internet, there are 48,000--something like 10x as many.

I hate to have gone so off-topic, but I have no knowledge about vaccines and the current controversy, although I will say that I think it's probably unwise to simply dismiss Dr. Deckoff-Jones so cavalierly.

What I do have is a genuine curiosity about the reporting of Trine Tsouderos.

Now, this didn't just happen, at least from my end; this didn't come from out of the blue. Those were questions I wanted to pose to Trine Tsouderos (or at least point to somehow publicly) for a very long time. My reasons are many, and to make this case this is by necessity going to be a very, very, very long blog post. There will also be some redundancy as I revisit some of what is posted above in more detail. Fair warning.

Now...it's important to me to try to be fair to everyone. That can be difficult at times when one perceives that others may not be fair themselves.

May not be fair to those of us with ME/CFS, but so many of us are used to that, for so long, many far longer than me.

May not be fair to those of us who believe that XMRV as a potential agent in ME/CFS, causal or otherwise, deserves a fair hearing, fairer than it's been getting.

There are three journalists in the mainstream media in particular who have written fairly regularly about XMRV, ME/CFS, either, both. Amy Dockser-Marcus in the Wall Street Journal, David Tuller in the New York Times, and Trine Tsouderos in the Chicago Tribune.

Amy Dockser-Marcus has written extensively about XMRV. In my view she has been fair, accurate, and thorough. That she has spent as much time as she has on this indicates to me that she clearly sees a story here, and her editors would, I surmise, agree. Many of her pieces are featured on the WSJ's Health Blog, which I assume doesn't make the print edition, but, nevertheless, she has done an exceptional job on what many of us ME/CFS patients see as THE major story involving this disease.

There have been a couple of pieces over the past few weeks that did apparently make the print edition. One or two had a tone that some of us might have interpreted as being slightly less friendly as previous pieces. Personally, I don't think Amy or any other journalist can really be our 'friend.' I do think any fair-minded person who understands the issues is going to view our overall situation--especially in Europe--as something that is cut-and-dried, a major story of neglect, abuse, crimes against humanity. But it's not easy to report on, and I'm not sure it's realistic to expect that we're going to like every piece they write.

Some of the pieces that David Tuller has written would bear this out, I believe. Remember that great piece he wrote in January? That was fantastic. But then a lot of people had problems with what he wrote when the PACE paper was published. Understandably so--to an extent. But then more recently he followed up with a piece that examined the issue of differences in cohorts in this disease. This was not strong enough for some, but to me it took a rare look at a major issue in this disease. And an accurate one. A necessary one, long overdue. Because, with all due sympathy for those who are 'chronically fatigued,' for whatever reason, that's a million miles from the disease as I know and live it.

Now, in the past, the NY Times had someone named Lawrence Altman, who was either a reporter, editor, perhaps both. I don't know. I have read a rumor that he had some sort of connection to the NIH--back in the Straus days. As I woke up with this disease one day in late 1999, this had not really been on my radar previously. I read of this rumor on Dan Moricoli's excellent CFS Knowledge Center site a year or two ago. I can't verify it. I do believe, however, that Hillary Johnson has alluded to this fairly recently in one of her blogs on Osler's Web (a site I could not recommend more strongly, if you are reading this and are not familiar with it). I don't believe Altman's name was mentioned by Hillary, but she did offer, optimistically, that the oft-repeated exercise of reaching out to Straus for comment in the Times' coverage back in the bad old days seems to have changed for the better in these days. Which in some ways are perhaps not quite as bad...collectively, for us as a patient population, certainly...but, for individual patients, particularly overseas, unfortunately, that's just plain wishful thinking, as they continue to be left to rot.

I once spoke with someone about ME/CFS who had some knowledge of how the Health section staff at the NY Times viewed CFS: "It's all in your head," he paraphrased, with a shrug of his shoulders. Well, that was some time ago, and I don't think David Tuller sees it that way, that's for sure. I think that comes through in his pieces even if they don't satisfy everyone all of the time. I'd like to think he would write what we want to read, consistently, but just as we battle inaccurate, discriminatory, abusive stereotypes and judgments, along with a healthy dollup of scorn, changing people's minds about something they think they know based on the 'evidence' supplied to them by 'experts' can be a challenge. (Quite a few of the comments left on his piece on the PACE Trial bear that out, reading as though it was the 'yuppie flu' 1980s all over again) I have to say I believe that, in the journalistic realm where there really shouldn't be 'sides...' that he is interested in presenting the evidence that proves all of the old wisdom about this disease to be wrong. Wrong, wrong, wrong. So in that sense, I do think he is on our 'side,' even if, for practical purposes, he really can't be.

The coverage we've gotten from Amy Dockser-Marcus and David Tuller over the past year or two is coverage I really never thought I'd see. Has it been completely satisfying? Perhaps not, but, boy, what a difference, especially in contrast to what's come before, and what is still presented in UK publications like the Guardian and the Independent. I don't see this is as a small victory; I am glad for this coverage even if I won't like every piece published; and while I take Mindy Kitei's recent piece calling for us to not accept 'crumbs' very seriously, I think overall this is far better than 'crumbs,' and if we're presented with a crumb...well, some are worth considering. Others aren't. But from these journalists, I do believe we have seen fairness, for us, and the readership of, excepting possibly the Washington Post, the two most-respected and prominent daily newspapers in the country.

Then there's Trine Tsouderos and her coverage over the past year or so.

Now...I am going to do my best to approach this as fairly as possible. No cracks from me about some of the other subjects she has written about. Not that I wouldn't like to bring that up, but it cheapens the argument I am interested in making. What's relevant is what she does now.

When it comes to ME/CFS and XMRV, I do not believe what she does is fair.

A year ago at this time, we had seen three studies published in a short period of time that produced results at odds with Lombardi et al. This has been discussed, hashed over, regurgitated. I did an interview with Dr. Enlander where we touched on some of this.

Briefly, the first study was done on samples provided by Simon Wessely and presented to PloS One seven weeks after the publication of Lombardi et al. The press coverage said much about the negative result, but not much about the haste with which this study was completed and published, or the difference in cohort.

The second study was supposed to have more than 100 samples sent by Dr. Enlander to the since-fired (??? why?) Jonathan Kerr (they were indeed sent). Some of you reading this know that few if any of these samples were tested; that they were not included in the published study; and that Kerr's co-author on Groom et al, Jonathan Stoye, hemmed and hawed when questioned by the Patient Advocate on this matter at the FDA's Blood Products Advisory Committee meeting back in December (more on that later). At that time it had been two or three weeks since Stoye had received an email from Dr. Enlander inquiring as to what had happened to the samples, which cost a considerable amount to ship overseas.

Stoye eventually responded to Dr. Enlander; after about five or six weeks, he could only say he did not know what had happened to those samples.

Since my blood was among those samples, I am gratified Dr. Stoye found the time to respond to a doctor who just happens to be a member of the Royal Society of Medicine. But I doubt he knows how difficult it can be to draw blood from some ME/CFS patients (fortunately for me, I do not fall into this category).

Following this study came the one published in the BMJ. The less said about this the better. Clearly this had become a mess, at least in public. Adversarial, if not angry, words, were exchanged between scientists who obviously do not agree. Lost in all of this was that none of these studies studied the same patient cohort as Lombardi et al. I have always focused on this. Others examine methodology, but as a layman I avoid that. As a patient, I know that there is often a significant overlap between the Fukuda Criteria for CFS and the Canadian Consensus Criteria for ME/CFS--everyone in the Science study qualified for a diagnosis with both.

I also know that Fukuda is flawed--and, depending on how it's applied, it can be very flawed. Is the Canadian Consensus Criteria perfect? Probably not, but it describes the disease I have so much more specifically and accurately that it's beyond unbelievable that it is roundly ignored by CDC--and, it follows, medical science--in favor of a list of symptoms that are largely subjective and can identify patients who, in my considered opinion, may well not even suffer from the disease that the term 'Chronic Fatigue Syndrome' was dubiously coined to describe. That this was unnecessary given the already-existing, documented, infectious disease Myalgic Encephalomyelitis leads one to wonder why we ended up cursed with this bullsh*t name, but that's another story entirely. Fatigue? More like paralysis, which might sound like an exaggeration, but only slightly.

Yes, I'm serious.

It's amazing to me that researchers and journalists chose not to explore this key difference. Aren't scientists and journalists supposed to care about what they write about? Care enough to actually research the subject? To understand how significant the differences can be between a Fukuda cohort--never mind Oxford or CDC Empirical--and a cohort defined by the CCC?

Well, either they--generally speaking--either they generally didn't know, and didn't care enough to find out, or they decided this cohort difference wasn't worth spending much time on. Perhaps a sentence here or there. Little else. Pretty much across the board in the coverage of the 3 papers that came out a year ago, which were mostly covered by the UK press.

It was in that climate, that mess, that an odd piece appeared here or there covering what was now a controversy I believe some might describe as noisy.

And on April 9th, 2010, a piece appeared in the Chicago Tribune that caught my eye. Yes, it was because I have a Google alert for "XMRV." It was a piece by Trine Tsouderos on Dr. Oz. You know, that guy with the TV show.

Have you ever watched that show?

If you take it seriously, please stop reading, now. You're on the wrong blog.

I'm not a fan.

But...there was this one thing that had stuck out some months before.

Dr. Oz did a segment on Chronic Fatigue Syndrome. It came out not long after the publication of Lombardi et al, but it had been taped well before.

Dr. Oz's expert guest was Dr. Jacob Teitelbaum.

If you believe Dr. Teitelbaum is a qualified representative to speak for this disease, to speak on symptoms and treatments, then stop reading, now. You're on the wrong blog.

No disrespect intended in either case.

Now, I don't think Dr. Oz is a fool (businessman first, entertainer second, physician third, perhaps, but no fool); and if I recall there was a patient outcry that brought it to his attention that in the wake of the publication of Lombardi et al, having run an episode with Teitelbaum, with all that entailed, didn't necessarily look so great. So he did another episode in which XMRV would be covered, and he booked another, far more competent guest: Dr. Donnica Moore.

The segment ran in December 2009. I thought it was a decent segment, all things considered. Perfect? No, but what is? Certainly better than the other guy & how he presents CFS. And, in spite of what I might think of his program, kudos to Dr. Oz for covering this story. Seriously.

Now, Dr. Oz is, shall we say, controversial. I suppose some would say--well, actually, they do--that he dabbles in areas of medicine that are speculative, or perhaps downright quacky. There's an expression used among a group of medical professionals who, for instance, doubt the efficacy of homeopathy: "woo." This term appears on countless medical blogs on a daily basis.

I have no problem with this. I think it's healthy to question that which may be questionable--although I will add that I don't embrace 'skepticism' because while healthy skepticism is great, necessary, even, unhealthy skepticism...well, I've seen more of that in the past year or so to last me a lifetime. Now, these sorts of blogs often cover topics in ways that tend to lead to responses from those who disagree, some of whom rant about, among other things...'Big Pharma.' Now...do those people have a point? I can't really say. Certainly "Big Pharma" is not without its warts, some of which are considerable.

On the other hand, I have seen the zeal to nail this enormous corporate monster misused, and misused badly. Based on my limited perusal of the Huffington Post, this seems to be a common theme. There's also some guy who calls himself the "Health Ranger." And then, some years back, Dateline did what I would describe as a hit piece on a medication that makes my life so much more bearable than it was before I took it that I can't even put it into words. They presented Neurontin as a dangerous drug that should be withdrawn, in a class with stuff like fen-phen (having had Steven Lamm as my GP when I first got sick, I would say, absolutely, that he is a physician in love with 'pharma' who used me as something of a guinea pig, while pronouncing me 'depressed,' which I suppose was why he sent me to a psychiatrist--who I saw with no trepidation whatsoever, and, since it was clear her office was not where I belonged, he never raised the subject again), Vioxx, etc. Their presentation was a cheesy ripoff of 60 Minutes, cheesy as hell, and I have never forgotten it.

So if your agenda is 'Big Pharma is bad, etc., then you are probably reading the wrong blog--and not just because, as Mary Schweitzer observed when Lombardi et al was published, it would likely be 'Big Pharma' that would work to provide a tangible solution for our struggle with this awful disease.

That said, some of the behavior I see displayed on some of these blogs--by doctors? Scientists?--reminds me of schoolyard bullies.

Whatever.

Dr. Oz covered XMRV, while many prominent doctors with public appeal, blogs, etc., did not. Actually, I'm pretty sure he was the only guy who did so. I didn't see the medical consultant experts on local tv channels cover it, I didn't see it on CNN. I didn't see guys like Andrew Weil or Gary Null covering it either. That hardly means it did not happen, but there are more than a few of us who, understandably, I hope, take an interest in this sort of thing. Such coverage would have been on YouTube in short order, but it wasn't. So I strongly suspect it just didn't really make tv, at least outside of Nevada.

The evidence that much that is presented on Dr. Oz is medically questionable is probably considerable, for many in the mainstream of both journalism and medicine. Some would swear by him, or others like him, and that's fine--who could argue with that? If something like homeopathy works because of a placebo effect, how much do 'claims' matter if results are achieved? And it's not like everything he covers is complete nonsense, I don't think, although, take my word for it, I don't pay attention. My take is that the Oprah-groomed Dr. Oz presents a lifestyle program that is framed within the context of medicine. If controversial guests are the norm and not the exception, I'd be surprised. But, he has had his share of controversial guests.

So this piece appears on April 9th, nearly a year ago as of this writing, and I'm reading it & wondering if the one 10-minute segment he did on XMRV is going to make it in the piece.

It made it in the piece.

http://articles.chicagotribune.com/2010-04-09/entertainment/ct-met-dr-oz-20100408_1_dr-mehmet-oz-rotavirus-unproven-autism-treatments/3

It was nearly a quarter of a somewhat lengthy piece. Maybe a quarter, maybe a smidgen more. But, forget quantity...what was reported?

The relevant portion begins:

"In December an episode focused on chronic fatigue syndrome, a mysterious ailment scientists know little about. The journal Science had recently published a study reporting on evidence of a retrovirus called XMRV in about two-thirds of patients diagnosed with the syndrome.

"The show started with a dramatic introduction — "Today on the Dr. Oz show: Could the secret to your exhaustion be a retrovirus?" — and featured a discussion between Oz and Dr. Donnica Moore, a women's health specialist.

"For the first time, we can say with confidence: We know this is not all in your head, we know this is not depression, and we know you don't have a midlife energy crisis," Moore said. "What we do know is that this is a serious, potentially debilitating neuro-immune disease that has an infectious component.""

Okay. What's the problem here? Is this irresponsible on the part of Oz or Dr. Moore?

"That kind of certainty is rarely justifiable weeks after publication of a paper."

What certainty? What certainty relevant to the paper?

Have there not been well-documented outbreaks HEAVILY SUGGESTING an infectious component for DECADES? In Los Angeles in 1934? Punta Gorda in 1958? Incline Village in 1984? Iceland in 1949? Royal Free Hospital in 1955?

Countless more? Who needs to see a complete list? I'm only omitting more than 50!

http://www.cfsuntied.com/history.html

Is there a problem with the certainty that 'it is not all in your head?'

Had Trine Tsouderos made herself familiar with the measurable physical characteristics of the Canadian Consensus-defined patient cohort in the Science study?

I'd love to see a case that CCC-defined ME/CFS is 'all in your head.' All those papers that Wessely & his goons have written? Check the cohort, check the criteria.

You show me one paper those Mengele-esque ghouls have EVER written on CCC-defined ME/CFS, let alone the 25%, "Severe ME" group of neglected, abused, tortured souls.

One.

Let them suggest that THOSE people are suffering from a functional somatic syndrome.

But, heck. Go and research CCC-defined ME/CFS and depression...or a mid-life crisis...or the sort of "CDC-defined CFS" that is, legitimately, a problem, sometimes a serious problem, that affects a lot of people...but is the "flavor" of "CFS" that people like Dr. Teitelbaum are actually speaking to, and about.

Now, I haven't gone back & looked at the Dr. Oz show on YouTube. I wonder. Did Dr. Moore say XMRV caused CFS? I don't remember her doing so. If she did, she probably should have phrased it differently--but if it were there, why would that quote not make it into the piece?

In other words, given Tsouderos' criticism...what exactly is it she's criticizing?

And on what basis?

Gee, maybe I should go a little softer. Maybe I'm the one not being 'fair' to Trine Tsouderos.

With all due respect...f*ck that. Is it wrong of me to take something like this apart piece by piece? I did ask myself this question.

No way.

Comments were presented by Professor Vincent Racaniello stating that it was irresponsible to conclude that XMRV causes CFS.

Okay, so who made that conclusion, and where, and, if so, why was it not specified and quoted in the piece?

"Moore also told Oz's audience that the virus was not contagious by air but may be by blood, that 10 million people may be infected and that a $400 commercial blood test is available to detect XMRV."

Probably true, possibly true, possibly true, definitely true. Now, what's controversial here?

10 million Americans may be infected?

In the subsequent pieces on XMRV written by Trine Tsouderos, I have seen last year's Lo et al study, the Harvey Alter paper that found something very, very, very like the retrovirus in the Science paper, mentioned, although, curiously, not by name. But since it wasn't identical--I believe I read they shared approximately 96% similarity--well, that's not XMRV, then, is it.

Trine Tsouderos never covered that paper, or anything having to do with the authors--to this day.

That study was likely in no small part undertaken because Lombardi et al found XMRV in 3.7% of healthy controls. Or was it 3.4%? I don't remember. Call it three and a half percent.

Three and a half percent of 300 million is...what?

Racianello was further quoted for context, offering all of the predictably cautious notes. Which is fine, of course. I enjoy and respect Professor Racaniello, his site, and his podcast (with the exception of one of his regular panelists), even if I'm not sure his approach to this story is sufficiently broad; in other words, he surely knows the virology, but I don't think he knows Chronic Fatigue Syndrome. Unlike others, however, he's pretty honest about it, and I think he recognizes that CFS presents unique difficulties to covering this issue--and I believe he's been pretty fair in his coverage.

What's not fine? How about that "$400 test?"

Does no once care that only WPI has been criticized for this test when Cooperative Diagnostics offered it first? Yes, they withdrew it last April. But, someone, please, show me something criticizing them for offering it. Anywhere. No, patient forums don't count.

No, only WPI deserved that criticism. And, heck, why would anyone want one of those tests done, anyway? I mean, it's not like it means anything, right?

Right--so the issue of people who are almost indescribably sick who have dealt with decades of scorn, disbelief, baseless accusations, neglect, and abuse, who might just gain some personal vindication from knowing they tested positive for a very serious virus...um...bad.

CBT--good. That (to be fair, not mentioned, to my knowledge, by Trine Tsoudeeros) makes people feel better about this disease! But shame on WPI for 'profiting' off of actually showing people something in the way of evidence of a very serious infection. Bad.

Where was I? In the Tribune piece, Dr. Moore states that the qualifying statements she offered were edited out.

Trine Tsouderos has never bothered mentioning that in Lo et al, the very-XMRV-like-retrovirus-that-we-can't-call-XMRV-because-it's-not-XMRV-therefore-it-doesn't-support-Judy-Mikovits'-XMRV/ME-CFS hypothesis-because-it's-not-XMRV-so-that-means-it-somehow-actually-disproves-that-hypothesis, that 6.8% of healthy controls were found to be infected with these XMRV-like viruses (classified as...ah, this is an alphabet soup. Better explained elsewhere)...and that those controls were blood donors.

Using XMRV as a stick to beat Dr. Oz...that, apparently, is just fine.

Come on. This is the Dr. Oz show. Were there no better devices with which to slam this clown? Nothing more relevant or substantial to illustrate the perfectly obvious about this lifestyle program? Good grief.

No--he should be nailed...and a quarter of the piece should be about this XMRV stuff. Yeah.

Well...it needs to be mentioned that, obviously, nobody knows how much editorial input played a role in this, and that it's possible that Trine Tsouderos wasn't the one who thought that XMRV should have been a key component in making Dr. Oz look bad.

But...then she kept writing about XMRV.

To be continued...